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Debut Author Hits The Jackpot With Novel About Alzheimer's

Many people dream about writing the great American novel. Matthew Thomas 39, has actually done it, with a novel about Alzheimer’s – a disease that will impact the lives and estate plans of many baby boomers. It’s a magnum opus born of personal experience and extreme financial sacrifice.

Thomas had never published anything before he devoted 10 years of his life to writing We Are Not Ourselves, much of that time while working as a high-school English teacher. His effort paid off last year when his book was auctioned for a staggering $1 million. Then it was featured in May as one of the Buzz Books for 2014 at Book Expo America, the Super Bowl of the publishing industry.

In a five-minute presentation there to a standing-room only audience of librarians and bookstore owners, among others, Marysue Rucci, editor-in-chief of the book’s publisher, Simon & Schuster, portrayed We Are Not Ourselves as a multi-generational story and breathlessly described Thomas’s writing. At the end of the session, those who had heard her presentation rushed to the front of the room to grab advance reader’s copies, stacked on a table there. Well in advance of its Aug. 19 launch date, it was on the reading list of many reviewers and book industry insiders.

Matthew Thomas with his son Gabe, then 2, on the bug carousel in the Bronx Zoo. Thomas spent 10 years working on his first novel and reached for the brass ring. Photo: Joy Parisi

Rucci did not reveal that We Are Not Ourselves was about Alzheimer’s and though the title foreshadows it, readers learn only gradually that one of the main characters has the disease. Ed Leary, a college professor and expert on the brain, is in his early 50s, when he begins to show signs of mental decline: irritability, aggressiveness, forgetfulness; and a slow loss of motor function. The book tells the story of how his wife Eileen, a nurse, puts the pieces together and, about halfway through the book, gets a diagnosis. In excruciating detail, it goes on to chronicle his gradual demise, and the emotional and financial impact it has on Eileen and Ed’s son Connell.

Thomas’s book is part of a small but apparently growing literature by people whose family members have had dementia. It includes Maria Shriver’s children’s book, “What’s Happening to Grandpa?,” published in 2004, and a new book by New Yorker cartoonist Roz Chast, Can’t we talk about something more PLEASANT? which I wrote about here. Such books can create a shared experience, awareness of the disease, and lead to better financial options for families. So it’s unfortunate that both his publisher and reviewers have concealed a central theme of We Are Not Ourselves.

Thomas says his father’s diagnosis with Alzheimer’s was a “protracted and delayed death sentence,” just as it was for his fictitious characters. With painterly detail in We Are Not Ourselves, he makes us feel like we are attending the surprise 50th birthday party that Eileen throws for Ed, shortly before they found out what was wrong with him. He didn’t remember or recognize a lot of people singing to him. Subtle imagery hints at what’s to come: “Eileen put her hand on his back as he blew out the candles with a remarkable lack of wind, so that a few stray flames survived his second and even third attempts.”

Though for the most part Thomas is writing what he knows, including scenes from his native New York, his digression into elder law isn’t totally accurate. There’s a scene in which, after Ed’s diagnosis, Eileen consults an elder lawyer who advises her to put all their assets in her name and then get divorced so Ed can qualify for Medicaid. Thomas says he researched that material, did not consult a lawyer about it, but “had faith in the veracity of all that.”

Kerry Peck, an elder lawyer in Chicago and co-author of the book, Alzheimer’s and the Law (2013), says the fictional lawyer didn’t get it quite right. Under Medicaid, there is what’s called a five-year “look back” period, meaning that the person applying for Medicaid must disclose all transfers of assets within the last five years. So if Eileen takes all of his assets, she must disclose the fact, and that is likely to make Ed ineligible for Medicaid.

Sadly, it’s true that getting divorced has become a financial strategy when one spouse gets Alzheimer’s, but the ploy, as Thomas describes it, doesn’t work for another reason, Peck notes. In many states, including New York, assets get equally divided in a divorce. And chances are Ed’s share would be too high for him to qualify for Medicaid, until he spends it down. The only thing these characters could accomplish, by getting divorced, is to preserve half the assets that they have accumulated together. After the divorce, only Ed’s share – not Eileen’s – would have to be spent on his care.

“Older adults are being forced to make some very difficult decisions,” Peck says. “It wrecks havoc on their lives.” In We Are Not Ourselves, Eileen is appalled by the lawyer’s advice, and dismisses the idea of getting divorced. Instead she struggles to pay the bills throughout his illness.

Thomas, who spent a decade writing the book, completely on speculation, acknowledges his own financial risk in doing that and says he “decided to reach for the brass ring.” Without any commitment from a publisher, he started writing the novel in 2003 while he was a student in the MFA program at University of California, Irvine. The first thing he wrote was the surprise birthday party scene, a 20-page version of which he submitted to a workshop class there. His thesis was 250 pages of the novel that he envisioned, but very little of which actually found its way into the final version of We Are Not Ourselves.

After a few months of writing on a computer, he switched to 8 ½ by 11-inch spiral notebooks and wrote most of the 620-page book in longhand. Until then, he was spending so much time revising what he had already written, that he wasn’t making any headway, he explains. Plus, he was losing sentences “that might have been better in the first iteration, than in the second or third,” he notes. “The unconscious mind throws off things sometimes in the first draft that can be really useful” and might be too easily discarded for writers working on a computer.

Before he had finished the novel, he would periodically take a break from the spiral notebooks, type huge chunks onto his computer, editing them as he went along. After that, he printed out sections, which he then put in paper vellum binders and copiously edited by hand. The process makes it impossible to count how many drafts the book went through, he says.

Meanwhile, his life progressed. He continued to write at night, while working as an English teacher at a New York City private school, and met his wife, Joy Parisi when he rented a carrel at Paragraph, a shared workspace for writers that she co-founded. When the two got married in 2009, the book still wasn’t finished.

Those were years of extreme frugality. Neither of them had much savings coming into the marriage – just student loans – and he was planning to give up his teaching job and $60,000 salary to write fulltime for a year. In anticipation of that, they kept a tight control on expenses. During warm weather they biked to work instead of taking the subway. They didn’t have a television, never ate out or went to the movies. And they didn’t buy new clothing or shoes.

Before their twins, Gabriel and Maddalena, were born in 2011,they signed up with a baby shower registry, and friends and family bought them the essentials. When he took the year off from work, the four of them were still occupying a one-bedroom apartment on the Upper East Side of Manhattan, with Thomas writing at the kitchen table or at the nearby Starbucks. Their rent was $1,300 – below-market, thanks to the Mitchell-Lama housing program. Under the Consolidated Omnibus Budget Reconciliation Act, known as COBRA, he was able to continue the health insurance coverage he had at his old job, by paying $1,700 per month. When their money ran out he went back to teaching, and found a storage room in the school where he could continue writing, after hours.

“It was really stressful,” says Thomas. Space was tight, by then the children were toddlers and “we wanted a break in the intensity of our lives,” he recalls. Together he and his wife kept setting deadlines by which he would finish the book, and he kept missing them. (At that point she still had not read the book.) Finally, on March 1, 2013, he sent it to an agent, who sold it a month later.

Thomas says he was “floored,” but perhaps he had a premonition. Shortly before that deal went through, the couple took what little they had been able to save after his return to teaching, and made a 10% down payment on a house. They closed on that four-bedroom Victorian, with an office, in Montclair, NJ, the day before the book auction.

“I was mentally ready to be a teacher for the next 30 years and pay it off,” he says. His debut novel might change that. This year he’s not teaching – he’s promoting We Are Not Ourselves and working on another novel. But he doesn’t have a contract or an advance for that one either.

After grabbing that brass ring, does he feel any pressure? Some, but not like the “terror” that he experienced with his first book, he says. “Nothing will match the kind of pressure I had when I was wondering how things would turn out.”

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